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Spinal Cord Injury Network USA (SCINetUSA)

Greetings Fellow CareCure Members,

I?€˜m Jim Bennett and I work at the W.M. Keck Center, Spinal Cord Injury Project, at Rutgers University. I am asking you to join me in launching spinal cord injury clinical trials in the United States!

On March 17, 2009, The North American Spinal Cord Injury Network (NASCINet) was formed. This came at the conclusion of the First Investigator Meeting at University Medical Center Brackenridge in Austin, Texas. The goal of the network is to test promising therapies to restore function in people with chronic spinal cord injuries (SCI).

We, the SCI Community, can and must support these trials by raising the needed funds. If we take an active role and work together, clinical trials for SCI will begin this year!

I am building a network of recruiters, ?€œThe Clinical Trial Support Squad?€?, whose goal is to procure donations from 100 individuals and families. We will use social networking websites such as Facebook, MySpace and Twitter to reach potential donors. Let?€™s get these clinical trails going!

If you would like to join ?€œThe Clinical Trial Support Squad?€? and get these trials going now, email me- jimbenn@rci.rutgers.edu.

Hi Jim- it sounds like a promising venture. I'd like to get involved in some aspect. On the website that you posted, it states that FDA approval could be sought by mid-2010. With adequate funds are trials possible this year?

I agree, let's get started. It's about time we do something as it relates to chronic SCI human clinical trials. Why would the Christopher Reeve foundation not be interested in helping with this? After all aren't they the figure head of our community with the public at large?

The question I have is why do we need to setup a new,different or seperate clinical trial network? What network is Geron going to use? What happened to http://www.christopherreeve.org/site...al_Network.htm ? I can't get the link to work, click on research on the home page , scroll down to clinical trials on the lower left of the screen and look for "Reeve Foundation North-American Clinincal Trials Network"

With times as tough as they are and money hard to come by shouldn't we be pooling our resources?

I agree, let's get started. It's about time we do something as it relates to chronic SCI human clinical trials. Why would the Christopher Reeve foundation not be interested in helping with this? After all aren't they the figure head of our community with the public at large?

The question I have is why do we need to setup a new,different or seperate clinical trial network? What network is Geron going to use? What happened to http://www.christopherreeve.org/site...al_Network.htm ? I can't get the link to work, click on research on the home page , scroll down to clinical trials on the lower left of the screen and look for "Reeve Foundation North-American Clinincal Trials Network"

With times as tough as they are and money hard to come by shouldn't we be pooling our resources?

Good questions. I too was wondering about what network was already in place that facilitated Geron to go ahead with their trial.

It is great to see all the excitement and willingness to step up and make these trials happen ASAP!

Our plan is to fund the Spinal Cord Injury Network USA (SCINetUSA) with many small donations from those with SCI, their families and friends. And of course we would be glad to accept LARGE donations We are asking that people donate 1 dollar per day. According to a national population paralysis survey released today by Reeve Foundation, there are 1.3 million people with SCI in the U.S. We have the numbers to fund SCINetUSA trials.

kickingber- The role of The Clinical Trial Support Squad is to bring the SCI Community together. We have pages set up on MySace, FaceBook and Twitter where donations will be accepted. The SCINetUSA website is being tweaked and will soon be ready to go. All of the Hospitals/Rehab Facilities taking place in the clinical trials will have their own websites where people can donate directly. We need to bring people to these websites for the purpose of donating. It is referred to as viral fundraising. When we are ready to launch, I will let you all know. In the meantime, please send me an email so I can add you to the list. jimbenn@rci.rutgers.edu

Chaz, I believe if the funding is in place, participating centers can begin the observational phase this year. This depends on many factors, Dr Young might want to respond...

rjames/carbar, I'll let Dr Young answer your question.

DreamersWillRide, sorry for the confusion. In the thread you posted, they took the initiative and started raising funds for SCINetUSA. I can see by the the enthusiasm, we will be raising much money! Unfortunately, we haven't been able to launch the fundraising campaign yet, and will be in China this and next week observing the clinical trials. I will be posting my adventures in China, in this forum I guess starting Sat.

Please email me if you want to be part of the Clinical Trial Support Squad.

Jim is referring to the North American Spinal Cord Injury Network where we will be starting clinical trials for people with chronic spinal cord injury in the United States. At the present, eight centers have expressed strong interest in doing the clinical trials. We are holding investigator meetings, raising funds, submitting applications, and organizing training workshops this summer. We are hoping that the centers will start recruiting subjects for the trials this fall. The first phase of the trial will be a 6-month observation period during which subjects are strongly encouraged to start standing at least an hour per day. We hope to initiate the treatment phase of the trial in the third quarter of 2010. The trial will compare the effects of intraspinal transplants of umbilical cord blood mononuclear cells (UCBMC transplant), the UCBMC transplant plus lithium, or rehabilitation alone. More details can be found at http://nascinet.org.

Good questions. I too was wondering about what network was already in place that facilitated Geron to go ahead with their trial.

Barbara,

The Geron trial is not being done by a "network". It is just a multicenter trial. A network is a standing group of centers that agree to work together to test therapies and to carry out multiple trials. While a multicenter clinical trial may involve many centers, it may not be a network. For example, the first spinal cord injury network that was formed was the National Acute Spinal Cord Injury Study (NASCIS) that I helped formed to test methylprednisolone, naloxone, tirilazad mesylate from 1978-1998. In the late 1990's, Acorda Therapeutics carried out various Fampridine trials with a network of over 82 spinal cord injury centers. In 2003, we formed the ChinaSCINet which consists of about 25 centers in China, Hong Kong, and Taiwan.

NACTN (North American Clinical Trial Network) was formed by the Christopher and Dana Reeve Foundation. As many here know, I am a strong supporter of the Christopher and Dana Reeve Foundation. NACTN is currently recruiting subjects for an acute spinal cord injury treatment trial. NASCINet is testing therapies for chronic spinal cord injury and will be carrying out trials that parallel those being done at the ChinaSCINet.